Where did caregivers go to vent and get all this wonderful advice and caring before this chat line was established? I have learned so much in just a short time. I don't feel alone anymore. When I get overwhelmed I look to see what is being said and I realize I'm not so bad off yet. Just a few blips! For now!! More to come for sure!! One thing I have learned is not to feel guilty about some of my feelings and to get it out!! I sure hope you are all still around when things do get really bad for us newbies.
There wasn't anything like this until I became so frustrated, felt so guilty about how I felt, and could find no one to talk about the truth about marriage and Alzheimer's Disease, that I started the website. The response was immediate, so it told me that I wasn't alone in my thoughts and feelings, which in this horrible journey is sometimes just enough to get us through.
My lifeline for info when I was confused by what I was being told, when I was frightened by hb's aggressive and violent behavior, for dealing with behaviors, suggestions on meds to control behaviors when the professionals couldn't/wouldn't help, I can go on and on....not to mention the practicalities of dealing with a spouse with dementia and all the day to day challenges. Each psychiatrist we see for DH ask me if I am a member of a support group and I tell them YES, on-line the BEST one I've found which has helped me survive this disease and given me practical day to day advice.
There are no words for how much this site has helped me, it's always comforting to know you are not alone. And I think that is the big "key"..just knowing that someone else is out there that you can immediately talk to, who understands, and doesn't judge. Also knowing what to expect takes the "fear" away. You still have to do what you have to do, you feel the way you need to, but you know that you'll have help...at any hour. I don't post often but I read most everything and can't thank everyone enough for the support. Hugs for all.....
companionship and knowing that others understand is a powerful medication on its own. and having someone in front of you 'walk the fire coals' and know they came out the other side without a lot of trauma is comforting. I have told hospice directors, drs, and social workers about this site for others as well. a place to belong and comprehend how this disease affects us all. divvi
I tell all the professionals who will listen to me that this is the best site for spouses/partners caring for their beloved with dementia. The geri-psych dh has been seeing for almost 1 year always asks me if I am still getting benefit from this site and I know she is recommending it to others in similar situations. I also told the geriatric care manager I hired for Rich several years ago and whenever she has something new to share (like the lamictal for hypersexual behavior) she tells me to post on this site for info and feedback.
A couple of years ago one of our sons told me I should find a blog so I did a search and thankfully came up with this one of Joan's.. What a relief to find others having some of the same issues as me and the help everyone on this site has been in seeing what may be coming in my future so I can be somewhat prepared. I don't post often but I go on the site at least once a day and cry and laugh with all of you. Thank you to Joan and to all that share what's happening in their daily life with this dementia devil that has invaded the lifes of our LO and us.
I agree with all of these comments above and I also spread the word about this site to professionals and spouses whenever an opportunity presents itself. God bless you Joan.
I recently shared the great site to a social worker who is employed with the Alzheimer Assn. She was not aware of it....She said she would check it out...I hope she did so that she can inform others what a tremendous site it is.
I also recently shared info about this site with our social worker - she took note of it, since she had another new client (spouse of AD) who also was in need of a support group. Our nearest "in person" support group is too far away to be practical.
This site has been my life line. I helped me with needs I didn't even know I had. It has been here for me before and after DH's death. It has been 1 year now. I still check in everyday. I live in an over 55 community in Florida. I shared this site with my community recently. I can't imagine what took me so long. I just never thought of it. I guess I was just too self absorbed. There just aren't enough words of thanks for Joan. Talk about an amazing person. Bless you, Joan.
Besides being a great support website with valuable information it's available day and night, holidays, and vacations.
In person support groups serve there place, but they aren't always practical for caregivers for many reasons. I love this website...the caretakers on here rock...and the exchange of information and suggestions is great.